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Lupron Side Effects Survey Results Part One: Scope and Severity

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lupron survey results

Survey History

A few years ago, I embarked on a massive research project involving medication adverse reactions. I launched several online studies on the drugs that were popping up on our radar screen as having the most frequent and serious side effects; side effects that were largely ignored in the medical literature. At the time, this work was unfunded and, to a large degree, remains so today (feel free to contribute to our efforts). Despite the lack of funding, I thought it was important to investigate drug side effects from the patient’s perspective. Why was it that patients were reporting such a long list of devastating side effects while evidence in medical literature was largely absent? Were these patient experiences simply anomalies that we happened to be seeing, or was there something real going on? Without more quantitative data, these questions could not be answered.

To explore these questions, I designed several large studies, launched them online, and began collecting data, hoping that somehow the money would come in to fund the data analysis. It didn’t. And so these studies remained online, month after month, year after year, collecting data; data that needed to be analyzed and made public.

Earlier this year, I was fortunate to garner a grant for a new online project involving birth control and blood clots. The woman responsible for the grant understood the need to get the data from these legacy studies out to the public. The grant afforded me, not only the assistance of another researcher and a writer, but a much needed statistician. Per her wishes, the statistician could begin tackling the data analysis for these legacy studies, when not needed for the birth control project, e.g. during the periods of data collection. We are so very grateful that she recognized the importance of these projects.

A Note about the Data Sets

The surveys I designed were comprehensive, the data sets are massive and because they were conducted using survey software not designed for such large projects, the data sets are messy and require a tremendous amount of preparation to do even the most basic statistics. Notwithstanding the help of a part-time statistician, it will take us some months to ferret through these data sets. Nevertheless, we will get the data out. Again, if you’d like to help expedite this process, funding for a full-time statistician or even multiple statisticians would be most welcomed.

Beginning with Lupron

First in line, is one of my least favorite drugs used in women’s healthcare: Lupron. For those new to our blog, we’ve written a lot about Lupron over the years. Lupron or Leuprolide is a GnRH agonist prescribed for endometriosis, uterine fibroids, cysts, undiagnosed pelvic pain, precocious puberty, during infertility treatments, and to treat some cancers. I am not a big fan of this drug. If you have read the personal stories of the devastation caused by Lupron, or the research showing the mechanisms by which it induces damage, I doubt you would be either. Despite the decades of anecdotal evidence of serious side effects and the bevy of lawsuits filed and/or settled there is very little quantitative research delineating the scope and severity of these side effects. Given that Lupron chemically castrates its recipients, diminishing gonadal hormone production entirely, we might expect a little more research and certainly more caution in prescribing this drug. This doesn’t appear to be the case, as tens of thousands of women, men, and even children are prescribed this drug every year and have been for decades. Perhaps this is because Lupron is profitable, very profitable. In 2015, Lupron netted its manufacturers over $800 million in revenue.

What I find striking about Lupron, is not that are very few studies to support its safety and efficacy, or even that its manufacturers have been embroiled in lawsuits for decades all the while maintaining its safety and efficacy: that is common practice in the pharmaceutical industry. What is striking about Lupron is that it is a drug that effectively shuts down gonadal steroidogenesis, a key component of human health, and only a few in the medical industry think this is problematic. Here is a drug that could be used to induce chemical castration in pedophiles and rapists, if that were considered ethical or safe (and it’s not), but is used in tens of thousands of women, year in and year out, under the auspices of an effective treatment, and sometimes, even as a diagnostic for endometriosis. Worse yet, it is used on children in cases of precocious puberty, and to spur growth; two completely contraindicated uses.

How is that a drug that blocks hormones so completely, hormones that have receptors and therefore regulatory roles in every tissue and organ of the body (brain, nervous system, heart, GI system, fat cells, immune cells, muscle, pancreas, gallbladder, liver ) be considered safe? distribution of estrogen receptors Am I missing some great medical insight that suggests we really don’t need those pesky hormones after all; that all of those hormone receptors located all over the brain and body are there just because? How can a drug like this be used so cavalierly in young women? I don’t have answers for those questions beyond a collective insanity that has permeated medical science where women’s health is concerned. Absent answers, however, what I can begin to provide are data regarding the scope and severity of potential side effects associated with this drug; data gathered from the women themselves, unfiltered by industry bias or potential economic gains. Indeed, I suspect, once the full results of this study are published, industry will be none too happy with me or with our little project. Cue trolls.

All snark aside, results from this project, and from our others studies, are critical to an emerging discussion about medication safety. Patient experiences tell us a great deal about drug safety and efficacy, if we ask. I think it’s high time that we begin asking.

Study Design

The Lupron Side Effects Survey was designed to assess potential side effects across all organ systems. Hormones have receptors everywhere: it stands to reason then, if we deplete those hormones rapidly and continuously, there will be effects wherever those hormones play regulatory or modulatory roles. Of course, since estradiol, the primary hormone affected by Lupron, is critical to mitochondrial morphology, and thus mitochondrial energetics, anywhere there are high demands for energy, the nervous system, the heart, GI, musculature, we might anticipate a high degree of effects in those systems as well, especially with longer term use and as the damage accrues.

What we didn’t know, and won’t until we fully analyze the data (what is presented here is only the beginning), is in which systems the side effects are most severe (do they follow the path of mitochondrial energetics or some other yet to be identified pattern ) and when (do they present early or late, relative to use?); which women were more likely to have side-effects (are there health characteristics that make side effects more likely or more serious?); is there a dose-response curve for side effects (do higher doses mean greater side effects – sometimes with hormones, this isn’t the case); or how the side effects cluster together (did they cluster by organ or tissue system or by some other variable, like energy demands?). Most importantly, we didn’t know whether Lupron was clinically effective at reducing the symptoms for which it was prescribed. There is some evidence to suggest that while pain symptoms associated with endometriosis may show a statistically significant reduction, particularly while the woman is taking the drug, the reduction was neither clinically meaningful nor long lasting. That is, symptoms may diminish by a few points on a pain scale while on the drug, but not abate completely, and then inevitably return upon cessation. In light of the potential side effects induced by this medication, one would expect nothing less than a large clinical reduction, even remediation of the disease process itself, as the only fair trade off. It is not clear whether Lupron can provide those benefits. None of these questions have been answered in the medical literature, despite the use of this drug for many decades.

Lupron Side Effect Survey Basics

The study was launched in 2013. The goal was to get 500 respondents, evaluate, redesign and relaunch follow-up studies. We reached the 500 respondents within a few months, but absent funding, were not able to perform the analyses. So I left the study up to collect data passively (no longer advertising it), until recently.

When we closed the study, we had over 1400 partially completed surveys. For robustness, we analyzed only those surveys that were over 90% complete. That netted data from over 1000 respondents (the number of respondents for each question varies and is listed below with each item).  The survey was anonymous, voluntary, and included informed consent.

Survey respondents were asked to provide basic demographic information, answer questions about pre-existing conditions, reasons for Lupron prescription, Lupron dosage, and degree of efficacy pre, during, and post Lupron usage. To capture the range and severity of potential side effects, survey respondents were asked to indicate the presence/absence and severity of symptoms experienced relative to their Lupron usage with a 0-4 Likert-type scale (0=None, 1=Mild, 2=Moderate, 3=Severe and 4=Life threatening). And yes, we recognize that ‘life-threatening’ is not an appropriate indicator for some types of symptoms. For consistency, however, we used the same rating scale across symptoms. One hundred and eighty possible symptoms were assessed.

This post will review range and severity of Lupron side effects. Subsequent posts will address efficacy, side-effect clustering, patient characteristics predicting side effects, side-effect dose-response curves and other topics.

Demographics

Survey respondents (n=1064) were largely Caucasian – 86.6% (African American -4.7%, Hispanic -2.6%, Other – 2.3%, Asian – 2%, American Indian/Alaska Native 1.6%) and educated (30% – some college, 34% – BA/BS, 15% – MA/MS). The average age of the survey respondent was 35.36 (SD – 8.63), while the average age at which Lupron was prescribed was 29.9 (SD – 8.2). Among these respondents, Lupron was most commonly prescribed for endometriosis (88%), painful periods (33.5%), heavy bleeding (26%), ovarian cysts (18%), PCOS (4%), IVF (4%), anemia (3.9%), breast cancer (1%), ovarian cancer (.4%), precocious puberty (.2%), other (8%).  Respondents could select multiple answers.

For the discussion that follows, see the interactive graphic below.  We will be discussing symptom categories from left to right. The categories of side effects are grouped, to some extent, by system involved or by symptom characteristics. To view the side effects, click any of the boxes below. The side effects within that category will appear, along with the number of respondents who answered that question. Click again on a particular side effect and the severity of the side effect is displayed by percentage of women who experienced each severity level. Click in the white space within the graphs to move up a level (note, this is a little tricky in the categories with lots of symptoms). The size of the graphic does not display well on mobile phones and/or when using the internet browser Internet Explorer. For the best viewing, please use a computer screen.

Patient Reported Side Effects Associated With Lupron

General Side Effects and Allergic Reactions

Compared to the frequency and severity of other symptoms experienced in association with Lupron, side effects relative to the injection itself and those that would be characterized as allergic reactions, itching, swelling, etc., were uncommon in most of the respondents, except for injection site pain, which was experienced in varying degrees of severity by over 70% of the respondents.

Sex and Libido

As one might expect with medication that chemically castrates its users, reductions in libido and other symptoms whose net result diminishes sexual interest and ability were common. Some degree of a loss of interest in sex was experienced by all but 23% of the women, with 38% reporting a severe diminishment in sexual interest. Nearly 44% of respondents reported moderate to severe pain during sex which may explained to some degree by the almost equal percentage of women reporting moderate to severe vaginal dryness. Other symptoms reported included breast pain, swelling, and to a much lesser extent, discharge.

Muscle and Joint Pain

Up to 50% of the women reported moderate to severe muscle and/or joint pain. This is notable inasmuch as for the majority of the women prescribed Lupron, pelvic and abdominal pain associated with endometriosis is the driving factor for the use of this drug. It appears that we may be trading pain in one region of the body for another.

Gastrointestinal and Related Symptoms

Here again we see that a large percentage of women (from 15-50% depending upon the symptom) report moderate to severe gastrointestinal disturbances from nausea, vomiting and diarrhea through constipation and even bowel obstruction. Moderate to severe bladder pain was common (~31%) as was difficulty in urination (~19%) and bladder control (~18%). Since bladder pain and interstitial cystitis are co-morbid with endometriosis, it is difficult to determine if these symptoms were precipitated or exacerbated by the Lupron or simply associated with the endometriosis and thus, not remediated by the medication. We will attempt to disentangle those relationships with further data analysis and in subsequent studies.

Of note, gallbladder disease (~6.2% – all categories combined), gallstones (~3%), kidney disease (2%), kidney stones (4.5%) and renal failure affect a smaller but noticeable number of Lupron recipients. This consistent with adverse event reporting elsewhere. Similarly, non-alcoholic fatty liver was noted in ~6.6% of the survey respondents.

Bone, Skin, and Related Symptoms

Bone formation is particularly hard hit by the diminishment of estradiol. Bone related symptoms are some of the most commonly reported side effects ascribed to Lupron. Research suggests Lupron induces a 5-6% decline in bone mineral density over just 6-12 months of use. Read more on the mechanisms by which Lupron induces bone loss.

Almost 20% of the women who completed the survey reported some degree of osteoporosis, and 16% reported cracking or brittle bones, 42% reported toothaches (9% severe) and 26% had cracking teeth. Osteonecrosis was reported by 3% of the respondents. Skin and hair symptoms were common and affected a sizable percentage of the respondents as well. What we failed to ask about were fractures in the spine and pelvis or osteoporosis in the jaw; side effects that commonly appear in post Lupron discussion boards. We will do so in subsequent surveys.

Temperature Dysregulation

As expected by a drug that induces a rapid menopausal state, vasomotor symptoms with temperature dysregulation were prominent afflicting ~90% of the respondents. Severe hot flashes and night sweats were reported by over half of the study population.

Metabolic Symptoms

Estradiol affects insulin regulation and general metabolism, so it stands to reason that if concentrations are diminished significantly, metabolic disruption would ensue. Hypoglycemia was reported by about 15% of the women, while hyperglycemia was reported by about 6%. Similarly, increased hunger and thirst were prominent at least 50% of the population, along with rapid weight gain (mild 19.2%, severe 25.9%). In contrast, rapid weight loss was reported by 12% of the respondents. New onset diabetes, Type 1 and Type 2 was reported by ~1% and 2.8% respectively. As we perform more advanced analyses, we will try to more fully characterize the metabolic changes in different groups of women.

Cardiovascular and Respiratory Symptoms

We know that the estrogens and androgens affect heart function via multiple mechanisms, both at the receptor level and via more global changes to mitochondrial functioning. What we don’t know is what impact blocking those hormones so abruptly and completely and sometimes even chronically, has on heart function. Clinically, the results of this survey point to dysregulated blood pressure (BP – 12.5%) and heart rate or rhythm (24.7%) with a trend towards the elevated measures for blood pressure (24.4% – all, 13.3% moderate to life threatening) and heart rate (27.7% – all, 22% moderate to life-threatening. However, there was a noticeable percentage of women who experienced lower blood pressure (16.4%) and heart rate (6.1%). At least 10 women experienced a heart attack, 36 women developed mitral valve prolapse, 10 women developed blood clots in the leg and 8 women had pulmonary emboli. Difficulty breathing and sleep apnea were reported by 22.2% and 15.6% respectively. As we do further analyses we’ll be able to more fully characterize the pattern of cardiovascular symptoms.

Brain and Nervous System Symptoms

The next five sections of the graphic represent the scope and severity of symptoms associated with the nervous system. Though categorized distinctly for purposes of display, the distinctions are somewhat arbitrary as the symptoms within each category represent those related to the brain and nervous system. Arguably, many of the cardiovascular symptoms discussed previously may also represent nervous system symptoms, possibly suggesting some degree of autonomic system dysregulation.

Headache, Migraine, Dizziness, and Seizures. A large percentage of women experienced headache and migraine pain, frequently rated as severe or life-threatening (27.2% and 28.3% respectively). Dizziness was common (69.4%), as was vertigo (46.9%). Sleepiness (68%) and fatigue (87.3) were common, but interestingly, also insomnia (76.4). Seizures reported by 5.1% of respondents. Falling (17.1%) and difficulty walking (27.9%), perhaps indicating balance issues, were also reported. TIAs were reported by 11 women and full strokes by 3 women.  (Nervous System Symptoms).

Myoclonus and Neuropathy. Shaking, jerking, numbness, spasms and tingling were experienced to some degree by 15%-35% of the survey respondents. A sizable percentage of women reported moderate to severe symptoms. Muscle weakness was reported by 11-34% of the respondents whereas limb and/or facial paralysis was experienced 3-4% of the women.  (Neuromuscular, Sensory Perception and Motor Control).

Hearing and Vision Disturbances. Some degree of blurred vision was experienced by 46.5% of the women, with a little over 20% rating the symptom moderate to severe. Partial loss of vision was reported by almost 10% of the women, half of them indicating moderate to severe loss. Similarly, almost 20% reported some hearing impairment. Similarly, hypersensitivity to light or to sound was indicated by 35% and 37.5% respectively. (Sensory and Motor Symptoms).

Speech and Language Disturbances. Fully 20-50% of the respondents reported difficulty with basic communication, everything from difficulty speaking and finding words to difficulty understanding speech, reading and writing. (Sensory and Motor Symptoms).

Mood, Memory, Mental Health and Affective Behavior. The brain is a major target of and source for steroid hormones. Estrogen receptors are co-localized on neurons and affect neurotransmission, neurite outgrowth, synaptogenesis and myelin growth  and estradiol is generally considered neuroprotective. The prefrontal cortex, hippocampus, and amygdala, responsible for regulating directed behavior, memory, and emotion, have high densities of estrogen receptors. Depleting estradiol would be expected to have a significant impact on these functions, and it did. It is here that we see some of the most troubling and least well appreciated (by the medical profession) side effects associated with Lupron. A significant percentage of women reported severe psychological disturbances ranging from depression and anxiety (>50%) to suicidality (15% severe to life-threatening). Visual or auditory hallucinations were experienced by ~12%, with >6% reporting moderate severe issues. Moderate to severe frontal cortex issues like dulled or inappropriate emotions, lack of motivation, impulsiveness were reported in 25% to over 50% of respondents. Moderately to severely altered mental states (delirium, disorientation, confusion) were reported by 6%-25% of the women.  Moderate to severe diminishment in memory capacity was reported by at least a third of the women. This is in addition the difficulties with language reported above. (Mood, Memory and Mental Health).

General Impressions

Consistent with the case stories and patient comments on message boards related to Lupron side effects, the majority of women feel rotten while on this drug. This is to be expected given the global distribution of estrogen receptors. The brain and nervous system seem particularly hard hit. Again, this is understandable given the density of estrogen receptors in the brain and the modulatory role it, and other steroid hormones, play in neurotransmission. By depriving the estrogen receptors of their cognate ligand, estradiol, Lupron fundamentally alters brain chemistry, abruptly and thoroughly. Perhaps even more troubling, estradiol is required for mitochondrial functioning. By depleting estradiol, the mitochondria are impaired, and with that impairment comes a long line of compensatory mechanisms that will ultimately derail not only mitochondrial capacity but also the capacity of all of the cell functions that require healthy mitochondria. The fact that we see such severe side effects attributable to nervous system function would be expected with estradiol depletion.

We Need Your Help

This post was published originally on Hormones Matter on September 1, 2016. Since then, we have lost our funding to complete this and the other ongoing studies. We have enormous data sets like this one on medication adverse reactions waiting to be analyzed and published. Without funding, however, these data will never see the light of day. If these issues are important to you, please contribute. If you know of an organization or benefactor interested in understanding short and long-term medication and vaccine reactions, please refer them to us.

Yes, I’d like to support Hormones Matter.

Photo by Diana Polekhina on Unsplash.

 

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Adverse Reactions, Hashimoto’s Thyroiditis, Gait, Balance and Tremors

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Gait, tremors with adverse medication vaccine reactions

One of the things I most love about social media and health research is the opportunity to identify patterns of illness across different patient groups. Here is an example of finding research from one patient group, ThyroidChange, that likely spans many others (Gardasil injured, post Lupron Hashimoto’s, and Fluoroquinolone reactions – to name but a few) and offers clues to a perplexing array of symptoms. The research, is about a little known association between movement and balance disorders and Hashimoto’s thyroiditis: Ataxia associated with Hashimoto’s disease: progressive non-familial adult onset cerebellar degeneration with autoimmune thyroiditis.  Some background.

Hashimoto’s Disease

Hashimoto’s is the most common causes of hypothyroidism afflicting women at a rate of 10 to 1 compared to men. It is an autoimmune disorder in which antibodies attack the thyroid gland and destroy its ability to maintain normal thyroid hormone concentrations. The most common symptoms include: fatigue, muscle pain, weight gain, depression, cognitive difficulties, cold intolerance, leg swelling, constipation, dry skin. If left untreated, goiter – a swollen thyroid gland, appears. If left untreated for an extended period, cardiomyopathy (swelling of the heart muscle), pleural (lung) and pericardial (heart) effusion (fluid), coma and other dangerous conditions develop.

Hashimoto’s and Cerebellar Degeneration

A little known risk in Hashimoto’s is cerebellar degeneration. The cerebellum is the cauliflower looking section at the base of the brain that controls motor coordination – the ability to perform coordinated tasks such as walking, focusing on a visual stimuli and reaching for objects in space. The walking and balance disturbances associated with cerebellar damage or degeneration have a very distinct look, a wide gait, with an inability to walk heel to toe. Cerebellar ataxia looks like this:

In recent years, cerebellar involvement in attention and mood regulation have also been noted. The physicians reporting the Hashimoto’s – ataxia connection present case studies of six patients with Hashimoto’s disease, presumably controlled with medication and a progressive and striking shrinkage of the cerebellum (see report for MRI images) along with progressively debilitating ataxia (walking and balance difficulties) and tremors. Here’s where it becomes interesting.

Hashimoto’s: Medication Adverse Reaction and Misdiagnosis

Hashimoto’s disease is prevalent in our research into medication adverse reactions for Gardasil and Cervarix and Lupron, with some indications it may develop post Fluoroquinolone injury as well. The symptoms are difficult to distinguish from other neurological and neuromuscular diseases such as chronic fatigue syndrome, fibromyalgia, multiple sclerosis and an array of psychiatric conditions, and so Hashimoto’s often goes undiagnosed or is misdiagnosed and mistreated for some time.

Hashimoto’s, Demyelination and Cerebellar Damage

In some of the more severe adverse reactions to medications and vaccines that would lead to Hashimoto’s, the tell tale cerebellar gait disturbances have been noted and documented, along with a specific type of tremor (discussed below).

Research from other groups shows a strong relationship between thyroid function and myelin/demylenation patterns in nerve fibers in animals. Specifically, insufficient T3 concentrations demyelinates nerve axons, while T3 supplementation elicits myelin regrowth. Myelin is the white sheathing, the insulation that protects nerves and improves the electrical conduction of messages in sensory, motor and other neurons. Like co-axial cable in electrical wiring, when the protective sheathing is lost, electrical conductance is disrupted. The early symptoms of a demyelinating disease neuromuscular pain, weakness, sometimes tremors. These can be misdiagnosed as multiple sclerosis, fibromyalgia, chronic pain, when in reality, the culprit is a diseased thyroid gland.

Back to the Cerebellum

The cerebellum is a focal point of white matter axons – myelinated sensory and motor nerves. The cerebellum is where input becomes coordinated into motor movements or movement patterns. White matter damage in the cerebellum causes cerebellar ataxia, the movement and balance disorders displayed above. Hashimoto’s elicits white matter disintegration. Adverse reactions to medications and vaccines can elicit autoimmune Hashimoto’s disease. See the connection?

The Thiamine – Gut Connection

It gets even more interesting when we add another component of systemic medication adverse reactions – nutritional malabsorption, specifically thiamine deficiency. Almost across the board, patients with medication or vaccine adverse reactions report gut disturbances, from leaky gut, to gastroparesis, constipation, pain and a myriad of other GI issues that make eating and then absorbing nutrients difficult. Gut issues are common in thyroid disease too.

As we learn more, and as individuals are tested, severe nutrient deficiencies are noted, in vitamin D, Vitamin B1, B12, Vitamin A, sometimes magnesium, copper and zine. We’ve recently learned of the connections between Vitamin B1 or thiamine deficiency and a set of conditions affecting the autonomic nervous system called dsyautonomia or Postural Orthostatic Tachycardia Syndrome (POTS) linked to thiamine deficiency in the post Gardasil and Cervarix injury group. It may be linked to other injured groups as well, but we do not know yet.

Thiamine and Cell Survival

Thiamine or vitamin B1, is necessary for cellular energy. It is a required co-factor in several enzymatic processes, including glucose metabolism and interestingly enough, myelin production (the Hashimoto’s – cerebellar connection). We can get thiamine only from diet. When diet suffers as in the case of chronic alcoholism, where most of the research on this topic is focused, or when nutritional uptake is impaired, thiamine deficiency ensues. Thiamine deficiency can elicit cell death by three mechanisms:

  1. Mitochondrial dysfunction (reduced energy access) and cell death by necrosis
  2. Programmed cell death – apoptosis
  3. Oxidative stress – the increase in free radicals or decrease in ability to clear them

Thiamine deficiency in and of itself can elicit a host of serious health symptoms. The cell death and disruption of cellular energy balance can be significant and lead to a totally disrupted autonomic system.

Thiamine and Myelin Growth

Add to those symptoms, the fact that thiamine is involved in the growth myelin sheathing around nerves, and we have a whole host of additional neuromuscular symptoms masking as fibromyalgia, multiple sclerosis, chronic fatigue. Like with MS, limb and body tremors are noted in dysautonomic syndromes such as POTS. (Video of POTS tremors, note the uniqueness of the POTS tremor and the similarity between it and the foot tremor shown above along with cerebellar ataxia).

Let thiamine deficiency continue unchecked for period and we get brain damage, as white matter – the myelin disintegrates in the brainstem, the cerebellum and likely continues elsewhere. One of the most prominent areas of damage in thiamine deficiency, is the cerebellum, and hence, the cerebellar ataxia (movement disorders) noted in chronic alcoholics who are thiamine deficient, but also observed post medication or vaccine adverse reaction.

The Double Whammy on Myelin and Cerebellar Function

In the case medication or vaccine adverse reactions, particularly those that reach the systemic level, we have a double whammy on myelin disintegration: from a diseased thyroid gland and a diseased gut. Hashimoto’s and the reduction of thyroid hormones, particularly T3, impairs nerve conduction by shifting from a constant and healthy remyelinating pattern to one of demyelination, while the lack of thiamine further impairs myelin regrowth, because it is a needed co-factor. Both deficiencies affect peripheral nerves, but both also hit the brainstem, the cerebellum and likely other areas within the brain.

Take Home Points

The science of adverse reactions is new and evolving and much of what I am reporting here remains speculative. However, it has become abundantly clear through our research that to address medication adverse reactions or vaccine adverse reactions in a simplistic fashion, by region, or in an organ specific manner, is to miss the broader implications of the compensatory disease processes that ensue. Moreover, to look for symptoms of adverse reactions simply by the drug’s mechanism of action and/or by the standard outcome variables listed in adverse event reporting systems, again misses the complexity of the human physiological response to what the body is perceiving as a toxin. I believe that the entire framework for understanding the body’s negative response to a medication must be shifted to a much broader, multi-system, and indeed, multidisciplinary approach. In the mean time, we will continue to collect data on adverse reactions and offer our readers points of consideration in their quests for healing. I should note, that finding these connections is entirely contingent on the input our community of patients and health activists, both via the personal health stories that so many of you have been willing to share and the data we collect through our research. You know more about your health and illness than we do.

What we Know So Far – Tests to Consider

If you have had an adverse reaction to a medication or vaccine and neuromuscular difficulties, like pain, numbness, motor coordination problems, tremors etc., consider testing for Hashimoto’s thyroiditis. Also, consider thyroid testing when fatigue, depression, mood lability (switching moods), constipation, attentional and focus difficulties are present. In fact, I would consider thyroid testing, specifically for autoimmune thyroid disease like Hashimoto’s, as one of the first disease processes to rule out.

If you have had an adverse reaction to a medication that includes gut disturbances, consider the possibility that you are deficient in key micronutrients such as Vitamin D, the B’s, Vitamin A, magnesium, copper, zinc. And given the modern diet, consider that you were probably borderline deficient even before experiencing the adverse reaction. These nutrients are critically important to health and healing (and no, I do not have an association with vitamin companies or testing companies). Some tests for these nutrients are more accurate than others, so be sure to do your homework first.

If you have symptoms associated with autonomic systems dysregulation such as those associated with POTS, dysautonomia and its various permutations, consider thiamine testing, especially, transkelotase testing.

Share Your Story

If you have experienced a reaction to a medication or vaccine, please share your story in a blog post. Write for us.

We Need Your Help

If you think what we do is worthwhile, contribute to research and our medical reporting at Hormones Matter. We’re totally unfunded at this point and can use your help to continue operations. Yes, I’d like to support Hormones Matter.

Image Source: Pixabay.

Postscript: This article was published originally on Hormones Matter on October 15, 2013. 

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Nightmare on Lupron Street

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lupron NIOSH category biohazard

Think Halloween, spooky costumes, and “trick or treat” – only it’s summertime. And you’re in the doctor’s office, awaiting your first Lupron injection.

The RN or MD enters the room, holding your Lupron injection, and s/he is wearing a chemotherapy gown, double chemotherapy gloves, and chemical safety goggles. Would you wonder, with legitimate fright, what in the world was going on? Would you hesitate to have something injected into your body which required special handling and protective gear by the healthcare worker in order to protect the healthcare worker from exposure to your Lupron injection? Would you consent to injecting this medication?

Hazardous Drug Classifications

In fact, Lupron, known as an “antineoplastic”[1] and “chemotherapy”, is also classified (along with other GnRH such as goserelin and triptorelin) as a “hazardous drug” by NIH (National Institutes of Health), NIOSH (National Institute for Occupational Safety and Health), and in Lupron’s MSDS (Material Safety Data Sheets); and the handling, preparation, and administration of Lupron by healthcare workers (or consumers injecting at home) requires special protective gear (gown, gloves, and goggles).

Yet, most peculiarly, no healthcare worker (to the best of my knowledge) has ever given a Lupron injection garbed in the required gear. And that would imply not one patient (to the best of my knowledge) has ever received their injection by a gowned, gloved, and goggled RN/MD.  If you have received a Lupron injection by a healthcare worker wearing any protective gear, let us know.

How can this be?  Several US government agencies, for several decades, have openly identified Lupron as a “hazardous drug” requiring special precautions in its handling, preparation, and administration.  Since the 1990s and through the 2000s, I personally have been asking questions and trying to raise the red flag through articles posted on my site LupronVictimsHub. Think about it it for a moment. Shouldn’t the consumer of Lupron be informed of such information? Would you consent to an injection of a hazardous agent for a benign condition from a gowned and double-gloved health worker? I believe that the industry wishes to ignore the fact that Lupron is classified as a “hazardous” drug. As a result consumers have been ‘shielded’ from this, and other, information central to an informed decision.

So these facts have been ‘open’ and ‘known’ for decades, the questions have been asked, “Alerts” have been issued, and still it would appear that entire fields of medicine are in the dark (i.e., gynecology, reproductive endocrinology, pediatric endocrinology, urology) about proper handling and administration of this hazardous drug. As a result, consumers have been denied vital information necessary to form an educated decision about consenting to this ‘treatment’ (trickment).

Impact on Healthcare Workers Unknown

What impact would there be upon healthcare workers (or consumers injecting Lupron in the home) if no protective gear is worn? How important is this issue, since it could be said there have been millions of Lupron injections administered and seemingly there appears to be no evidence of any problem. But the problem is there have been no studies of healthcare workers’ occupational exposure to Lupron in order to answer this question definitively.

The NIOSH Director has said chemotherapy drugs “can result in adverse health outcomes in workers who are exposed to these drugs, including cancer, reproductive problems, and organ damage when recommended safe handling guidelines are not followed.”

Studies have been conducted showing increased levels of antineoplastic drugs in the environment and in the urine of nurses and other hospital personnel in contact with hazardous drugs or following a spill (here , here and here). Other studies have found a significant increased risk of miscarriages and stillbirths in nurses and pharmacists handling hazardous drugs, and another study of oncology nurses identified that occupational exposure to antineoplastic drugs may reduce fertility and increase poor neonatal outcomes. Unfortunately, these studies and surveys do not appear to have included Lupron and identify only a few or the ‘top 20’ antineoplastics.

A search of PubMed for ‘Lupron leuprolide’ and ‘occupational exposure’ yields “no items found”.  In light of Lupron’s common use and the apparent long-standing disregard of safe handling techniques, there is no legitimate excuse for the lack of investigation into potential occupational exposure.   (A search of PubMed for “Lupron” [as of 8/5/16] displayed 3,122 published articles.)

NIOSH Alert

The 2004 Alert  by NIOSH (as well as in subsequent NIOSH lists), identifies that leuprolide (Lupron) has been included on NIOSH’s “hazardous drug” list because of its “carcinogenicity, teratogenicity (reproductive and developmental toxicity), and genotoxicity” properties (see pages 32, 37).  This Alert (and subsequent NIOSH lists) advised “[w]hen a drug has been judged to be hazardous, the various precautions outlined in this Alert should be applied when handling that drug” (see page 33) (emphasis mine).

There are no safe exposure levels for carcinogens.  For nearly three decades “authoritative guidelines developed by professional practice organizations and federal agencies for the safe handling of these hazardous drugs have been available … [yet] [d]espite the longstanding availability of safe handling guidance, recommended practices are not always followed …”.

Lupron labels completely fail to identify the need for protective gear when handling, preparing and administering Lupron. The manufacturer of this drug appears to have recognized the need to attempt to reduce occupational exposure, as evidenced in some formulations, by the manufacturer’s use of an engineering control in Lupron syringe luer-lock system. Clearly education and training on the hazardous nature of Lupron and need for personal protective equipment has been universally lacking, and much more information and instruction is necessary.

It would appear to be time to euphemistically ‘take the gloves off’.  A ‘fast-track tutorial’ for healthcare workers (and consumers in the home) who are handling, preparing and administering Lupron/GnRHa needs to take place immediately (it’s time to ‘put the gloves [etc.] on’).  The label should be revised to include, plainly and unmistakably, language identifying it as a “hazardous drug”, with specific delineation of safe handling technique and personal protective equipment required for its handling, preparation, and administration. Surveys should be conducted and studies initiated to evaluate the health and reproductive status of persons who, for years, regularly handled, prepared and administered Lupron without using any personal protective equipment. Finally, professional practice organizations should be made to explain how the proper handling of Lupron has ‘fallen through the cracks’ for 30+ years, placing healthcare workers (and consumers injecting Lupron in the home) at unknown and unnecessary risk.

For further details and additional background information, please see my recent article ‘Decades-Long Universal Disregard for NIOSH Precautions During Handling, Preparing, and Administering the “Hazardous Drug” Lupron’.

[1] Lupron is most often referred to as a “Hormonal Antineoplastic”. However, it has also been classified (by the deHaen Modified American Hospital Formulary Service Therapeutic Classification System) as an “Antineoplastic/OTHER” (emphasis original). This deHaen Classification System further delineates its categories numerically, and Lupron’s “Antineoplastic/OTHER” classification is assigned the number “10:00.12”, as opposed to the deHaen’s “Antineoplastic/Hormone” classification number of “10:00.10”. (deHaen Modified American Hospital Formulary Service Therapeutic Classification System, New Drug Analysis Europe and Japan, 1995, Vol. XIV, p.16). I remain unable to define “OTHER”, however other drugs carrying the “10:00.12” classification include Interferon.

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Lupron: A Different Kind of Suffering

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I had other plans for my future. I never imagined I would become disabled from a pharmaceutical drug that I trusted my doctor to recommend: the poison that is Lupron. I took this medication as my doctor recommended for my endometriosis, but little did I know when I took that second shot that I would be rushed to the doctor with tachycardia and that my life as I knew it would change forever. Never again would I enjoy hiking, bicycling, swimming, and travel. Even long walks would eventually become a challenge.

Before Lupron, I was a different person. I worked full-time as an executive assistant. I hiked, biked, went dancing, did all my housework, loved to cook, read and write poetry and short stories. I enjoyed life, in other words.  Before Lupron, I was organized, out-going, engaging in events and life. Watch commercials for popular fibromyalgia medicine and it describes me how I am now, just replace fibro with Lupron. I can’t engage in any of the activities I used to love. My husband took early retirement to enjoy life with me and I’ve been too sick to travel or even just take a walk in the park.

The initial shock (there is no other word for it) my body was thrown into after the first Lupron shot was horrid! I had such violent hot flashes that I would end up in the E.R. with what I was told was a “panic attack” and that I was okay, and all tests were normal! What about the fact that I felt like I was literally dying, with every side effect listed in the literature (which is staggering) for Lupron and could only manage to concentrate well enough to read about a month after I took that last shot? The first time I sat in front of a computer and read The Lupron Victims Network, I knew I had made a tragic mistake and my heart sank. Since that day, I have become an avid researcher, trying to find some way to get my life back, chasing my tail around the information highway to be disappointed time after time.

The next six months were spent trying to muster enough energy to buy groceries, have a life, enjoy my life. One of the most alarming things was the fact that I couldn’t think: I couldn’t put a sentence together in my head. My husband would ask me a question and my answer would be “I don’t know” and I really didn’t know, even simple everyday things! Such poverty of thought put me into a depression I could not explain to myself, let alone to doctors. The anxiety was horrible.

I felt a little better when my body starting making estrogen again, but then came the pain, especially in my legs. Xanax and ibuprofen were my only friends, and I took lots of them, to take the edge off the pain. I was nervous to take other medications, as I was scared of medicines in a way that was unhealthy. Every medicine I tried either made me feel worse or I had strange, sensitive reactions to it, something that still happens today.

All this happened in the fall of 1997, one day after my 41st birthday. I will be 60 this year and have been sick THAT long. There were periods of time when I managed fairly well with a handful of pills, massage and other gentle modalities. The popular water exercise everyone recommends–water aerobics–provided little to no relief. After a year and a half, I gave it up and hurt LESS.

Then, I had a surprise. I was 46 and almost fainted at home one day. I went to the doctor and found out that I was pregnant for the first time! We were shocked and elated until I went into withdrawal from muscle relaxers, tranquilizers, and other pills that I was taking to help manage pain, anxiety, and all the other symptoms. Five days later, I miscarried my baby at 3 months pregnant. We were traumatized. I blamed the doctor, Lupron and big pharma.

I found out later I had a prolapsed uterus from taking Lupron, and two years after the miscarriage, I had a hysterectomy. I kept my ovaries thinking I would be thrown back into Lupron hell if I shocked my body again. Since then, I have had more problems from my teeth, to my back, to my thyroid, to dry eyes; there is always something going on in the saga of my unwellness. And, my official diagnosis is fibromyalgia! You guessed it by now, when everything is wrong, let’s not insult her by calling her a hypochondriac. Although they might as well, since it is just as hard to be taken seriously and respected, and since I HAVE a diagnosis, why look for anything else, unless of course it will make money for everyone.

My faith in the medical establishment is extremely crippled. I am surprised if a doctor believes me when I tell him Lupron made me permanently ill. There have been a few, and I mean FEW– and I have seen numerous doctors of various specialties, sometimes traveling hundreds of miles, to no avail.

I have to accept that this is now my life. I have neuro/endocrine/immune system dysregulation brought on by a poison that I willingly agreed to, having no idea what would happen as a result. Of this I am sure. Period. Nothing you can say, show me, or otherwise do will convince me that I am wrong, misled, or uninformed. I am living the sadness, and sometimes overwhelming life of chronic illness imposed upon me by the poison that is Lupron.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Parasites: A Possible Cause of Endometriosis, PCOS, and Other Chronic, Degenerative Illnesses

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Dorothy Garcia

My intention with this post is to help inform the general public about a possible cause of various chronic/degenerative illnesses: parasites. I should begin by saying, I am NOT a medical doctor. Although I have much experience working in the healthcare field as an employee of various naturopathic doctors, chiropractors and holistic practitioners and I am a massage therapist and have extensive training in anatomy and pathology, my training and medical experience with parasites occurred AFTER I was diagnosed with endometriosis and used Lupron.

When I say parasites, I am using this term broadly. I am not just talking about worms. I’m also speaking of arthropods, flukes (flatworms), roundworms, pinworms, hookworms, tapeworms, protozoa, fungi, slime molds, mildews, bacteria, spirochetes, mycoplasmas, nanobacteria, etc. Parasites can range in size from microscopic (nanobacteria) to 30 feet long (tape worms). They each have their own life cycle, method of reproduction and can cause damage to multiple organs. In my case, parasites were responsible for my endometriosis and ill-health.

My Struggle with Endometriosis

Since the age of 15, when I finally hit puberty, I experienced crazy irregular periods. I was bleeding every two weeks. Little did I realize when I started my periods that it would be the launch-pad into a life of routine doctor and hospital visits.  I had various laparoscopic surgeries for ovarian cysts. I have tested almost every birth control on the market (from the pill to the patch).

No matter what pill I took or what surgery was performed, I wasn’t getting better. Instead, as the years passed, I got progressively worse. 

At a young age, I grew accustomed to being sick. I was used to getting my blood drawn and having IV’s inserted (and it usually took 3 pricks to hit a vein because my arms were so “fluffy” from the extra weight I carried). I followed the doctor’s orders, filled my prescriptions, and my parents paid the co-pays thinking they were doing the best of their child.

Everything came to a head in my early twenties, when I was a missionary for my church.  My service was cut short due to the symptoms of endometriosis. At that point, doctors had put me on the OrthoEvra patch. It was yet another failed attempt at using birth control to treat my symptoms. Because I was far from my primary doctor, and no one knew what to do with me, I was sent back home.

My primary doctor prescribed narcotics for the chronic pain and referred me to a gynecologist who was well-versed in endometriosis. His opinion, after many diagnostic procedures, was that the endometriosis had spread so much that the only option I had was to try Lupron as an attempt to save my uterus. If it didn’t work, he would do surgery.

I opted for Lupron.

He also informed me he wanted to prescribe Prozac to help with the side effects that come with Lupron. I was already well versed in the side effects of Prozac, and that wasn’t something I wanted to deal with. I politely declined.

I was told it would be a couple of weeks before the Lupron would be available, due to needing pre-approval from my parents’ insurance (since it cost $500/shot at that time).  Upon leaving the gyno’s office, I started to grow a wild hair… I decided to make a pit stop to the health food store before I went back home. I bought a bottle of herbs for female hormone balance for $6. It was the best decision of my life.

One week after taking the herbs I noticed that the pain was starting to back off.  I was able to ween myself off the pain killers. By the time I was back at the gyno’s office to get my first injection of Lupron, I was already having second thoughts. Why go through with this drug if the herbs are working? I really wish I had listened to my gut in that moment. Once I had my first injection, my life started to turn into my own personal hell.

Hot flashes, pain in my joints, lethargic, constantly hungry, and moody; I was no longer myself. Granted, I wasn’t in pain like before, but the pain was gone when I started the herbs. I couldn’t say Lupron did anything for the endometriosis pain. All I knew is the effect of the drug was worse than I expected. I felt like I aged overnight, and I didn’t know what to do about it.

After two injections, I made the decision to stop using Lupron.

Fast forward a couple of years later, I eventually got married and became a widow before I celebrated my one year anniversary. I fired my medical doctor, filed a complaint with the FDA about Lupron and decided to pave my own path to healing. I was done with playing chem-lab with my body. If a $6 bottle of herbs could make that big of a difference, then what else was out there that I had yet to explore?

Introducing the Practitioner Who Saved My Life

I moved out west to Utah in an attempt to build a new life for myself. Some friends of mine, who also re-located to Utah, informed me about a homeopath that helped them overcome the chronic/degenerative conditions that they experienced. One of them was working for him.  He let me know that he spoke to the practitioner about my situation and wanted me to come to the office right away. The practitioner said my problem was an easy one to fix.

Now, I’m sure you can imagine what I thought when I heard someone say endometriosis was “easy to fix”. I didn’t believe it. I wasn’t sure what I was in for, but I figured I had nothing left to lose.

During my visit with him, we didn’t really talk much about endometriosis. Instead he educated me on parasites. He informed me that what I was experiencing was actually the result of parasites invading the uterus and endometrial lining of the uterus. I learned how parasites don’t just live in the digestive tract, they can live anywhere in the body. There are parasites that have their preferred organ to dwell in (like liver flukes – the name says it all). They can inhabit the pancreas, the brain, the lungs, the heart and even the body cavity.

It is very easy to become a host; too easy. The tragic thing about parasites is that they go on living, completely undetected, slowly killing their host by leaving them chronically nutrient deficient, suppressing their immune system, burrowing holes in their organs and slowly eating them alive. The worst of it, the medical community has turned a blind eye to this epidemic and traditional diagnostic exams (stool samples and blood samples) aren’t sufficient enough to detect them.

My new practitioner explained how the uterus is a perfect place for parasites because it is a hollow space, isolated from the digestive tract (thus, it can’t be touched by typical parasite cleanses). He posed the question to me, “Now the cells of the endometrial lining of the uterus are specifically designed for that part of the uterus, and nowhere else in the body.  How do you think those cells got outside of the uterus?  How did that webbing appear from out of nowhere?  Does the body decide it’s going to magically displace cells to wherever the heck it wants to? And if you think about it, why are dogs and cats recommended to get de-wormed on a regular basis to help them stay healthy? Dogs have to take heart worm pills every month. Why do we think we are immune to parasites?”  When he posed that question, I began thinking about my childhood.

When I was a kid, I used to play with stray cats that lived in my yard.  We also had a dog that lived outside. I remember when I finished playing with them, I never washed my hands (I lived in the country so hygiene wasn’t really enforced in my home).  It made sense as to why I would get parasites “down there” because if I had parasite eggs on my hands (from playing with the animals) and I used the bathroom, then the eggs could easily have made their way from my hands to the toilet tissue, to my girl space. Or if I used a tampon without washing my hands beforehand… well, you get the picture.  It started to make sense.

At the close of my session with him, I was thankful that fate brought me to his office.  I felt completely enlightened on my condition.  I felt relief that there was someone out there that had an explanation as to what was going on inside my body.  I spent the last of my moving money on my bill at his office (this covered his office fee and remedies). I didn’t regret it one bit.

Recovery from Endometriosis and Uterine Parasites

The protocol he used was very simple. First he used muscle testing (Applied Kinesiology) to check to see what kinds of pathogens were keeping my body sick (for example: parasites, bacteria, fungi, molds, mildews, yeasts, etc.) and recommend herbs and homeopathy to kill it off. Then he would check for weaknesses in various body systems and organs and recommended herbs and homeopathy to make them stronger. The idea behind this is that once you get rid of what is suppressing the immune system, then the body’s natural defense mechanisms kick in and the body is better capable of absorbing nutrients from food.  When the body is getting the proper nutrition needed, and no longer robbed by the parasites, then the body can start repairing the damage that was done.

The way I knew this was working was from what came out of me when I went to the bathroom. Granted, he did warn me that I might not see much because typically the worms get broken down during the digestion process. I did see some residuals of worms in my stools. They looked like little orange sticks that resembled skinny shredded carrots.  I saw a bunch of black granules that resembled sand.  I also saw white pieces that resembled sesame seeds and rice.

Six months of working with him I felt like a new person. I felt a huge shift in my body and my being. The cramping and pain had stopped.  I had more energy and stamina. I wasn’t feeling down and depressive.  I was hopeful for the future. And now seven years later, I am a health and fitness coach, massage therapist, remarried, a mom of two kids (without any hormone therapy) and living a life that I once dreamed of while lying on the couch, watching Sex In The City high on narcotics. Back then, I didn’t even think something like this was possible.

When I speak with other women, currently enduring the pains of endometriosis, and tell them I’m now symptom free and no longer on medications, they look at me like I’m crazy.  I know that I’m probably the first and only person to pass through their life making such a claim.  When I speak with other medical doctors about my experience, they are quick to brush it off because I worked with a “quack” (because homeopathy is considered hog-wash, even though it’s existed for hundreds of years and is still widely used in Europe).  My new primary doctor (who was also my OB when I was pregnant with my kids) saw the endometriosis battle scars on my uterus when he performed the C-Section for my babies.  He too refuses to delve into how I recovered from endometriosis.

It blows my mind every time.

Why Is This Being Ignored?  Information about Parasites for Doctors and Holistic Practitioners

The reason why parasites aren’t considered in conventional medicine is because most people in the academic/medical field consider parasites to be a third world problem. Parasites are not solely a third world problem. We live in an age where there are no borders and boundaries. We can travel from one end of the earth to the other in a matter of a few hours. We can experience other cultures and ways of life as long as we hold a passport.  Because of this, certain pathologies that were isolated in one region of the world are now easily spread to other areas. Wildlife that was native to one part of the world can suddenly end up in your back yard, disrupting the ecosystem, due to someone smuggling it onto a plane. Even our produce and meats are imported from other countries. Just because something may be a problem in one part of the world doesn’t mean we are immune to it here in the US. Just because one species of animal may be a common host, doesn’t mean we aren’t a possible carrier for it as well (especially if the host animal is part of our diet). So despite our insistence to the contrary, parasites are a problem; one likely causing a myriad of chronic health problems (including Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, etc.).

Another reason most physicians don’t consider parasites is because, most of the diagnostic exams available are grossly inadequate for parasite testing.  Stool samples are the main diagnostic exam for parasites. If there are parasites in the stools it’s still not an accurate representation of what’s going on inside the rest of the body. Nevertheless, stool samples are a good start, but they are not commonly used in primary care.

If you are a naturopathic doctor, it would be of great benefit to you and your patients to consider adding some form of testing for parasites to your protocol; especially when dealing with patients who struggle with chronic/degenerative illnesses and who are not benefiting from diet and lifestyle changes or conventional medications. If you are a practitioner that wants documentable proof (especially for insurance billing), then prescribe a stool test for your patients to check for parasites. There are various labs that do detailed exams for parasites. You can find them on Google, but here are some labs that offer parasite testing:

  • Great Smokies Diagnostic Labs:  1-800-522-4762
  • Diagnos-Techs:  1-800-878-3787
  • Doctor’s Data:  1-800-323-2784
  • Parasitology Center:  1-480-767-2522

Please note, I have no association with these labs. These are provided for informational purposes only. Even though stool samples are considered the gold standard for parasite testing, a better way to test for parasites might be muscle testing. This is the method that was used by the doctor who helped me overcome the parasites that were wreaking havoc on my health.  Muscle testing isn’t as widely accepted in the medical field, but that didn’t concern me.

Muscle testing (aka: Kinesiology) is a tool that taps into the innate wisdom of the body and, when used properly, allows the body to “tell” you what is wrong with it.  I have had this used several times in my life using various healing modalities that I learned in massage school. I was always pleasantly surprised how accurately those I worked with were able to get to the cause of a problem just by asking very specific questions and allowing the body to respond accordingly. Unfortunately, it is not something that medical insurance will cover, nor a means to get diagnoses for the proper ICD codes for insurance reimbursement.  All I know is it was the means to get me to where I am today, and I am forever thankful to the practitioner who was wise enough to learn how to use it properly and put into practice what he preached.

For Those Suffering from Endometriosis, Infertility, PCOS, Chronic Fatigue Syndrome, Fibromyalgia, IBS and Other Similar Illnesses: Get Tested for Parasites

If you are one who earnestly desires healing in your life, then you must be the one to seek it out for yourself. You cannot wait for someone else to hand it to you on a silver platter.  It’s a complicated process, but as you can read here it’s not always as complicated as it may seem. The answers are usually much simpler than we imagine.

Do your research. Try new things. If you’re already miserable with how things are now, then it’ll be of great benefit to you to change it up.

Just don’t make the mistake of self-diagnosis. Granted, the herbs helped me very much before I received the Lupron injection, but they weren’t the answer to the problem. They were a band aid.  I needed the help of a professional who had experience dealing with this problem to help unravel the tangled web that was my body. Don’t be afraid of bringing up the possibility of parasites to your doctor and ask for testing. If your doctor doesn’t believe you, then find another doctor, preferably a naturopathic/holistic doctor.

You were born to live and enjoy your life. Live it by design, not by default.  Don’t let some microscopic organism/illness/diagnosis rob you of that joy!

References for Educational and Research Purposes

If you know of scientific studies connecting parasites to chronic illness, especially endometriosis, please add to the list.

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Using Lupron to Diagnose Endometriosis: Fact or Medical Fiction

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Lupron to diagnose endometriosis

Lupron or Leuprolide is prescribed regularly for endometriosis, fibroids and undiagnosable pelvic pain. The evidence supporting its use is sketchy at best. Perhaps the most troubling practice is the use of Lupron to ‘diagnose’ endometriosis, an indication for which there is little evidence.

Can Lupron Response Indicate Endometriosis?

According to a report by the Practice Committee for Reproductive Medicine, No.

“The gonadotropin-releasing hormone (GnRH) agonist Lupron has been advocated to diagnose and treat endometriosis without performing laparoscopy, based primarily on the results of one study involving 95 women with moderate to severe chronic pelvic pain unrelated to menstruation. In this study, participants were randomized to receive depo-leuprolide 3.75 mg or placebo injection monthly for three months followed by laparoscopy. The underlying premise was that improved pain symptoms during the hypoestrogenic state induced by GnRH agonist treatment might reliably indicate that endometriosis was the cause.”

What the research found, belies the utility and subsequent marketing of using Lupron to diagnose endometriosis. Pain relief in response to Lupron was not significantly different in those who did or did not have detectable endometriosis at laparoscopy (81.8% vs. 72.7%, respectively). That means, even by the company’s own research the response to Lupron did not and could not accurately diagnose the endometriosis.

Do I Really Need Laparoscopy to Diagnose Endometriosis?

“My doctor said that if I get better on Lupron it means that I have endometriosis. He said I might as well take Lupron now and not wait for the laparoscopy.”  In other words, is the currently popular practice of using a GnRH agonist (e.g. Lupron) as a treatment for endometriosis without doing a laparoscopy first warranted? No, it is not and here’s why.

Lupron pre-laparoscopy has become common practice since the publication of a study by the drug’s manufacturer (no bias there) several years ago. The study showed that 82% of women with pelvic pain that had not responded to milder pain medications or antibiotics were shown to have endometriosis. When Lupron was given and the ovaries temporarily shut off, pain improved. However, pain was also reduced in the women who did not have endometriosis. This happens because hormones made by the ovaries influence pain perception. Therefore, if pain gets better after Lupron is given, it does not necessarily mean that the pain is due to endometriosis. Failure to understand how hormones, pain, endometriosis and Lupron interact leads to an incorrect diagnosis in at least 25% of cases. In addition, many forms of endometriosis do not respond to this drug. Its expense and high level of side effects (e.g. rapid loss of bone calcium) also make it a drug to be used with caution. Our experience is that using the drug before doing a laparoscopy most often delays, but does not eliminate, the ultimate need for laparoscopy.

Is Laparoscopy the Only Way to Diagnose Endometriosis?

Yes. Laparoscopic inspection of the pelvis is the gold standard for diagnosis of endometriosis. There is evidence in abundance qualifying the need for laparoscopic inspection to confirm the diagnosis – and effective treatment of – endometriosis. A non-invasive diagnostic test would be especially useful in the endometriosis and gynepathology community, indeed; however, despite ongoing research and development of many, many such potential tests and markers, not a single one has achieved benchmark and can be relied upon to diagnose endometriosis accurately. Moreover, medical therapy, like Lupron should not be used as evidence of a diagnosis. Medical therapy has never ‘cured the disease’.  Medical therapies like Lupron are used merely to temporarily suppress some of the symptoms associated with endometriosis; it is neither long-lasting nor wholly effective, and it is not without serious side-effects.

Are all Laparoscopic Techniques the Same?

No. You will need to find an expert in laparscopic excision for endometriosis. Meticulous laparoscopic excision (LAPEX), has significantly superior results to not only obtaining diagnosis through histological confirmation, but also to removing disease effectively while preserving healthy tissue and organs. Some specialty centers have rates as low as 7-10% recurrence in their patient populations as far as 20 years out from initial excision. The recurrence rate for ablation and vaporization, on the other hand, are very high – ranging around 40-60% within the very first year following surgery; some as high as 77% within the first 2 years. Superficial ablation and other topical removal of only obvious lesions results in disease left behind and in many cases, depositing carbon which can be painful on its own – as well as be confused for endometriosis at later surgical re-intervention [Nezhat et al.].

Of course; it goes without saying – all of this notwithstanding: what matters most is whether the patient is adequately relieved of her pain. For that, Lupron is most certainly not indicated.

Lupron Side Effects Survey

To determine the rate, range and scope of side-effects associated with Lupron use in women’s health,  Lucine Health Sciences and Hormones Matter are conducting an online survey: The Lupron Side Effects Survey. The survey is anonymous and takes only 15 minutes to complete. If you are woman who has ever been prescribed Lupron, please take a few minutes to complete the survey. Your data will give other women the information they need to make a decision about Lupron.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE.  The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff.  We continue our efforts as architects of the legacy in gold standard endometriosis care.

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You Cannot Do This to Us Anymore! Lupron Does Not Work

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My Lupron Endometriosis Nightmare

It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room.  As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.

I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.

The Lupron Journey Begins – How Bad Can it Be?

Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”

The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.

Maybe Lupron Does Work

I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.

Maybe Not – Lupron Hell

It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds.  For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze.  I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.

I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.

Long Term Side Effects of Lupron

I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.

Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.

From Patient to Patient Advocate: The Birth of Endo Warriors

I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.

I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”

What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.

Information about Endo Warriors

If you are battling endometriosis and would like support from other Endo Warriors please contact us:

Email- endowarriors@gmail.com

Facebook- https://www.facebook.com/pages/Endo-Warriors/496001373757588?ref=hl

Twitter- @endowarriors and @jillybean126

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

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Angela’s Lupron Story

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In June 2006 a 10cm endometrioma was found on my ultrasound. I researched as much as I could about endometriosis as I was told it was a possibility that I had it. I was sent to my local Gyno and she told me she wanted to put me on Lupron and that nothing could be done even if I had Endo. I refused. I didn’t want to be put on a medication if it wasn’t proven that I had endometriosis. To me, that was really stupid on the doctor’s part. I did my research. I knew it was used for endometriosis, but unless I was diagnosed, I was NOT going on Lupron.

I searched high and low and thanks to the worldwide web I found two specialists in Toronto for endometriosis, so I had my doctor send the referral over. He found the recto-vaginal cyst by rectal and vaginal exam that had been missed for 14 years. I was happy that finally they had found something. I knew it wasn’t all in my head for these many years. He sent me to his protégé.

Post Surgery Lupron

I was on the operating table three months later in June 2007. After my surgery I was out of it. The surgeon supposedly talked to me but I was not coherent at the time so his intern was told to come in. I was told that Lupron was the best medication for the severity of the disease I had and she gave me a prescription. I felt like I had to take it. I just had surgery and she was telling me it was the best option and at the time. The specialist, the Gyno and the GP all told me that “Lupron suppresses endometriosis.”

From June to September 2007, I took the monthly injections and I remember the first month feeling somewhat okay. I guess I put most of the blame for the side effects on my recent surgery. After two months, depression started to kick in and a major fibromyalgia flare as well. My bones and joints were so sore. My muscles ached like crazy and that was with the Add-back therapy. I would get sharp pains to the pelvis that would leave me breathless. On the plus side, no period. After three months I went back on my regular birth control pill, Marvelon. The transition went well.

Lupron Again and Again

In June 2008 I was told to go on Lupron again. I must have been a glutton for punishment because I did, for another three months of monthly injections without the Add-back therapy. My mood was extremely out of control. I was angry and agitated. The Lupron injection was causing insomnia. My moods were all over the place and the pain intense, however, there was no bleeding or Endo pain. After this, I went right back on Marvelon.

In 2011 I went back and forth from the Endo specialist who did my surgery and pain management clinic. I contracted PID. I felt that there was major damage from the PID plus Endo. The original surgeon said there was fluid in the cul-de-sac and told me I had to go on Lupron again. He said if the pain and fluid went away it was Endo and he would operate and if it didn’t, it wasn’t Endo.

So in October 2011, I had one injection that lasted for three months without the Add-back therapy, per his request. I didn’t want to, but the pain was too much to take, so I did it anyways. Well, this was the worst experience yet because even if I wanted off of Lupron after a month, I couldn’t because it was a 3 month injection. I was screwed. The first month was okay, but then I became extremely depressed, no sex drive, chronic headaches, nausea, no ambition, and insomnia.

I went back after three months. He didn’t do an ultrasound and because my pain wasn’t gone he said it wasn’t Endo; it was neuropathic pain syndrome. Oh Lord. He really pissed me off. So back to the pain management clinic to be a guinea pig for another year before she would agree to operate.

In February of 2013 I had surgery again and Endo WAS found.

What I Learned

Lupron did not suppress my endometriosis. The doctors either did not know this or prescribed it anyway. I realized after my first injection, that the medical staff at the clinics also did not know how to use Lupron. They had to read the instructions on the box, and even then, would prepare the injection wrong. The instructions clearly say “DON’T SHAKE.”  It is supposed to be mixed by rocking it back and forth slowly and gently. I noticed that when they mixed it improperly, the Lupron side-effects came on much more quickly and much stronger than when they mixed it properly. I don’t know if this is coincidence or not.

If I had known what I know now about Endo and Lupron after speaking to Dr. Redwine, I would never have taken this medication to begin with. Nothing suppresses Endo, no medication, no diets etc. If it is not all excised, it will continue to grow, period. I went through years of hell because the doctors did not know what they were doing. Please don’t make the same mistake I did.

Participate in Research

Hormones MatterTM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

Related posts:

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